Hi Welcome to the site, I hope you find others with the same condition to talk to but there are other members including myself who know what it is like to live with pain and not have family who understand. So if you want to PM me anytime please do.
In 2012 I had a dr after testing me for arthritis and coming back clean diagnose me with HMS. He went into full detail as to what it was. But then never wrote the diagnoses in my medical records.
Before then I was misdiagnosed with arthritis since early childhood. I cant actually remember a day without some form of pain. By the time I was 7 I had matching braces and wraps for my feet, ankles, knees, hips, back, and wrists/ hands. I suffered from constant swelling, sprains, and dislocations. And if Im not paying attention my knees will bend backwards while standing still. Today I walk with a cane.
At puberty everything got worse. Turns out I also have HT-H and PCOS both resulting in rapid and extreme weight gain. Getting a dr to take me seriously is nearly impossible. When I was a kid I was just trying to get out of school...after puberty all my problems are cause Im fat.
For the last 2yrs Ive been fighting for my disability. But with improper medical records I keep being denied.
So I quess my questions are..
1. Are there specialists out there for HMS?
2. How should I go about getting properly tested/ diagnosed?
3. What should I look for/ expect?
4. Has anyone else gone thru this/ gotten disability for it?
Ive found alot of drs Ive been too dont seem to even know what HMS is! My current dr referred me to an ortho...They wanted $250 per body part (that's over 2 grand) just to look at me and they didnt even know what HMS was or how to test/ treat it.
I would just like to comfort those with JHS that it is not necessarily a condition that worsens over time. You learn strategies and coping skills for one thing . I have found it is better not to stretch although one feels a need to do that. I lie down often and rest until the pain subsides and now I am 71 yrs old I hardly have any pain as things automatically tighten up. Yeh! But I still make sure I don't over do things.
I have found a way to deal with my constipation and no longer have POTS slthough I have to keep myself warm as if I sit down it can be hot and yet I will get cold. So a heating pad is one of my essentials from my youth. I also have found I need to have isotonic hydration on some days which helps with energy levels too. I hope this helps some people. Lastly I have an amazing osteopath who specialises in hypermobility problems. Well worth the money to pay for it to be fee of pain.